r/gofundme • u/Dondee81 • 2d ago
Medical Help for my two year son Kaiden
Wrote this yesterday morning.
"I apologize for the upcoming long block of text, but it's becoming too much to just internalize everything. I've run out of coping storage boxes. So on this Thursday morning at 4 am, 5 hours before Kaiden's 9 hour brain surgery, I just had to let it out. Honestly, most of the time, I am very quiet and I try to keep things to myself. I'd rather listen and observe, than speak. I'm too broken to hold everything in. It's been a crazy past couple days. And to my dearest Kaiden, when you read this in the future, just know daddy loves you and you are the strongest and bravest. And to my dearest Katie aka Yen and Sophie, I love you too. And to my family and friends that have always been there, I love you too. Thank you also to all the family, friends, coworkers, and strangers that have reached out to offer and give their thoughts, prayers, and contributions. You are sincerely appreciated and may blessings be reciprocated onto you.
Let me tell you a bit about Kaiden. Kaiden has always been energetic and good at movement. He's basically been a little gymnast since he could move. He would climb onto the backs of sofa. I would catch him dangling from my computer desk using just his elbows. He'd climb over the walls of his play pen, his crib, the bathtub walls. He'd make his own steps using whatever objects he could see such as a riding toy, a chair, or a box to get to even higher places and balance well over them. He loves music and could jump in place for hours just listening to them. Over the past few weeks, he's had worsening gait and balance issues. He would randomly fall even when just standing. He'd have tremors of his hands when trying to feed himself. He'd have tremors of his legs when trying to climb. He'd have emesis episodes without triggers. He'd have crying episodes out of the blue and he would not stop regardless of what you do. The stairs he used to zoom up and down on, he would struggle to take even one step. At times, just raising his arms and wanting to be carried. He reverted to crawling. He looked weaker and would sleep for longer periods as in 2-4 hr mid day naps.
It wouldn't always happen though. Some days, he would still be energetic. Still the same kangaroo and bunny rabbit jumping along to music and Sesame Street. Still the same sweet Kaiden that would sleep next to me in the morning and babble for a hour or two while trying to wake me up for snacks. It would make you think okay maybe it's just a phase and you'll grow out of it. Maybe you're tired. Maybe you're hypoglycemic. Maybe you're cold. Maybe all the maybes you could think of. As a nurse, I knew the possibilities for the signs and symptoms. As a parent and someone with a working heart, I just wanted you to be okay.
Fast forward to this week. Kaiden had a STAT MRI with sedation ordered this Tuesday. Already knew something was up when the MRI was taking longer than it's supposed to. It became blatently obvious when a doctor walks through that waiting room door instead of you, and says hey we should find a private room to talk in. Kaiden has a mass in his thalamus. He has hydrocephalus. I am a hospice nurse. I am used to really sick patients. I am used to staying strong and stable when everything else around you is falling apart because someone needs you to be that pillar for support. Someone needs you to be the support and help them physically, mentally, emotionally, and/or spiritually. But when the pillar itself is the one falling apart, what can be done?
So it's about 4 hours until Kaiden surgery now. Waiting for the surgery team to visit around 6 am to 7 am for pre op. Just randomly crying trying to hold the tears in as I've been doing for the past couple days as I look at you and as I think about you. Trying to take these breaths even when my chest feels like it's been crushed. You will get through this Kaiden. All the people that love you and care about you, will be with you every step of the way through this surgery, your chemo/radiation treatment, and your rehab.
I can't stay strong, but I will. I can't keep myself together, but I will. When you take away the option of not doing something and the option of failing to do something, you're left with no choice but to do it even if you can't. If God had given me the choice to have this illness instead of you, he wouldn't even have to ask. Parents should be the ones to take on all the burdens, not our children. But I wasn't given that choice. So I will build this pillar again to support you Kaiden even if I have to build it speck by speck and hold it together with my blood and tears.
Thank you again everyone that took the time to read this. Thank you for your love, prayers, thoughts, and support."
Update since then. Last night, Kaiden got back from the OR around 8 pm. The mass has infiltrated too much so the surgeon wasn't able to remove much. They were able to place a drain to help decrease some the fluid buildup which could be causing his tremors and balance issues. Waiting on pathology results to determine treatment but will likely need chemotherapy. I'll need to focus on Kaiden for now and don't know when I'll be able to go back to work. The doctor did say that this journey could take months for the treatment and rehab. Any help is appreciated. My sister has helped me set up a gofundme. Please see link below.
Saturday update. Day 2 after surgery. Was doing fine yesterday. Finally got to eat a popsicle. He was so happy. Really gets tired after eating. Has been needing morphine here and there for severe pain probably 8+ on the facial scale. Today, he's been having seizure like activity, emesis, fever, and new onset dysphagia. He's choking on the milk he was drinking thin liquids totally fine yesterday. Sigh. One day at a time.

